Quest Summer 2016 | Muscular Dystrophy Association

Featured Articles

All in the Family

Michelle Murphy, a marketing coordinator from Albany, N.Y., with myotonic muscular dystrophy (MMD, or DM), has been running for as long as she can remember. So when she was diagnosed with MMD in the summer of 2014, she began looking for ways she could use her passion for running to raise money to fight the disease.

The Competitive Edge

Scott Hatley, 37, began playing adaptive sports soon after he was diagnosed with Duchenne muscular dystrophy (DMD) at age 4. He began with wheelchair basketball, playing with friends in his garage. From there, he went on to adaptive skiing, wheelchair rugby and a few other activities before finding his current passion, electric hockey. E-hockey relies on battery-powered carts that can zoom up to 10 mph and turn on a dime.

Choice Seating

Manufacturer, brand and model are merely the first choices in the methodical process of wheelchair seating assessment. These days, it’s wheelchair accessories that present the widest selection and biggest potential for enhancing independence and mobility. There are accessories for comfort, attachments for smoother rides and additions designed to maximize independence for people living with neuromuscular diseases.

Access MDA Summer 2016

When Jessica Aviles’ son Gabe was diagnosed with Duchenne muscular dystrophy (DMD) in November 2015, it was a complete shock. “I literally knew nothing [about the disease,]” Aviles says. “I had to look it up in the parking lot.”Over the next six months, Aviles went from knowing nothing about DMD to heading the largest Muscle Walk team at the MDA Muscle Walk of Tampa Bay. Early on in her research, Aviles came across MDA and Muscle Walk and decided to get involved so she and her family could join and support MDA’s cause.

Challenging the Nation to Live Unlimited

MDA families face daily challenges that often make walking, playing, running, getting dressed, hugging and talking difficult — sometimes seemingly impossible. But these courageous families are defying their limits every day and inspiring a nation to do the same.For example, Davion Bartlett was diagnosed with Duchenne muscular dystrophy when he was 4 years old. He quickly learned as a young child that his disease would never define him or hold him back.

Strength in Numbers: A Walk to Remember

“I am the captain of the Muscle Walk team Hope for Harrison. The team walks in honor of Harrison, my son, who was diagnosed with Duchenne muscular dystrophy in the summer of 2011. The biggest reason I support MDA is that MDA is about living a full life, including working to ensure those living with diseases like DMD live long, full lives.” — Jessie Aldridge, parent

Where to Stay When Away

The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair.

Progress Now Summer 2016

Results from an MDA-supported multicenter phase 1b clinical trial have shown that treatment with pyrimethamine was safe and well-tolerated and associated with reduced levels of SOD1 protein in people with ALS caused by a mutation in the gene for SOD1.Pyrimethamine is a small molecule approved by the U.S. Food and Drug Administration for treatment in humans of the parasitic infections malaria and toxoplasmosis.

Four Steps to Booking a Hotel Room for Wheelchair Users

As an avid traveler who happens to be a wheelchair user, I do my fair share of booking hotels. It's a complicated process that I've somewhat mastered over the years. While most people can just go online and book their ideal hotel in a matter of minutes, it's not quite that easy for us wheelchair users. I recently called a hotel to ask if they were accessible, and they told me that they certainly were.

Living Unlimited Across America

This summer, MDA launched a new campaign called Live Unlimited that was inspired by the stories of individuals and families we serve. Together with our MDA community, we’ve challenged Americans to defy their limits — those we sometimes place on ourselves and those defined by others — and live life to the fullest.

Earning Potential

Simon Cantos works hard at his job as an inside sales engineer for Carrier Corporation, a leading company in the heating, air conditioning and ventilation industry. “Engineering is extremely difficult, and I want to be compensated properly for what I do,” he says.Cantos, 33, who lives with Ullrich congenital muscular dystrophy (CMD), receives funding for dependent care from a state-sponsored program called Medical Assistance for Workers with Disabilities. He pays an out-of-pocket rate to stay in the program that provides funding for his personal care attendant to help with daily needs. The rate is based on a percentage of his salary and isn’t available once income thresholds are reached. Cantos says he is close to, but hasn’t yet exceeded, that ceiling.

Features

Strength in Numbers

Strength in Numbers: A Walk to Remember

Research Updates

Progress Now Summer 2016

Forward

Living Unlimited Across America

From Where I Sit

Love, Marriage, Science and a Baby Carriage

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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